By IDA

 - April 15, 2019

Welcome to our April newsletter! We extend a particular thanks to those who have contributed to this newsletter. We continue to welcome and encourage all of you to contribute to the future newsletters by emailing us at: hlpf2019 [at] ida-secretariat.org.

IN THIS EDITION:

  1. Information on disability data webinar series
  2. Main topic -  Disability-disaggregated data collection in an eye hospital in Paraguay
  3. Blogs
    -Blog #1: UN Statistical Commission - "Better Data Better Lives"
    -Blog #2: The 9th IAEG-SDGs Meeting Update - Collecting Disability Data Globally
  4. Updates and other news
    -
    Update #1: UN Statistical Commission - Side Event
    -Update #2 - Commission on the Status of Women (CSW) Presentation
    -Update #3 - Ninth IAEG-SDGs meeting in Beirut, Lebanon from 25-28 March 2019
    -Update #4: Consolidating Logistics for Assistive Technology Supply and Provision – Phase II (CLASP II)
    -Update #5 - Enactment of National the Disability Act in Nigeria: What Next?
    -Update #6 - Webinar: “Debrief from 9th IAEG-SDGs meeting and next steps” 
  5. Resources 
    -Collecting and using data on disability to inform inclusive development
    -EUD’s Gender Equality Working Group - inputs to CSW presentation
    -E-learning on Collecting Data for Inclusion of Persons with Disabilities
    -Country diagnostics from development finance institutions
    -IFES’ Election Access Observation Toolkit
    -UN ESCWA Data Portal
  6. Marketplace

1. Information on disability data webinar series

The Stakeholder Group of Persons with Disabilities held the third webinar of its series on 27 March on country experiences on disability data collection. If you were unable to join us, click here for a recording of the webinar. Additionally, presentations can be found below:

WEBINAR #4
Title: Gathering data on children with disabilities and learn about administrative data
When: 22 May 2019
Time: 10:00 AM - 11:00 AM EDT (New York time)
Register here for this webinar.

2. Main topic: Disability-disaggregated data collection in an eye hospital in Paraguay

Co-authored by: Manfred Mörchen, Olmedo Zambrano, Alexander Páez, David Lewis, CBM and Fundación Vision, Paraguay
Article 25 of the United Nations Convention on the Rights of Persons with Disabilities emphasizes the importance of access for persons with disabilities to health services, including those from rural areas. Naturally, this encompasses the access to eye hospitals where services are offered that could potentially minimize and prevent further disabilities such as avoidable visual impairment. Disabling eye diseases most often affect older people and neglected populations such as poor or rural communities, women or indigenous peoples. Considering the association between age, poverty and disability one would assume that a significant number of patients accessing an eye hospital in a poorer environment do not have only visual but also additional impairments, such as hearing or walking difficulties. A recent synthesis evaluation of CBM-supported eye health programs highlighted the dearth of data disaggregated by disability. It is therefore difficult to estimate how many persons with disabilities access eye hospitals.

We report key results of a pilot project at the Fundación Vision (FV) eye hospital, Paraguay, which aimed to test the Washington Group (WG) questions in the daily routine of a busy satellite eye hospital in a rural area of Paraguay.

Two versions of the WG questions were tested (Short Set/SS and the Extended Set WG-ES 3, excluding the upper-body questions). Eye hospital staff (nurses, administrators, and social workers) were trained for one week on how to use the WG questions by trainers with extensive experience in community-based inclusive development in South America. Additional advice was provided by the International Center for Evidence in Disability, London. The questionnaires were translated, with back-translation, by a team composed of native Spanish and Guarani speakers among the FV staff.* Both versions were used alternatively from July to September 2018. The questionnaires were printed out and applied before checking the visual acuity. Data entry was inputted daily into an excel sheet, and analysis was conducted by FV staff and team members of CBM’s Inclusive Eye Health team following WG recommendations for analysis.

From July 10 to September 7, 2018, a total of 1,021 patients were asked to answer the WG questionnaire. Twenty-two questionnaires were not included in the analysis as they were conducted with parents of children who had been younger than five years. This resulted in 999 (male = 443, female = 556 patients) analysed questionnaires with 498 (49.8%) patients aged five years and older answering the short version and 501 (50.2) patients aged 13 years and older answering the extended version. The mean age of the patients was 47.6 years (male = 47,3 and female = 47,8 years). Overall 276 (27.7 %) patients reported at least one type of disability. Visual disability was most common with 16.4%. The second most reported disability was difficulties with communicating (9.6%). Disability because of hearing loss was reported in 3.5%, difficulty walking in 3.8%, difficulty remembering in 5.9%, and difficulty with self-care in 1.9% of all patients. The rate of disability increased significantly with age, for example, 61.5% of those patients aged 71 years and older reported at least one type of disability. Thirty-two percent of those categorized as a person with a disability had reported multiple disabilities. Of those patients who answered the WG ES-3 a total of 3.6% were categorized as a person with a disability because of anxiety/nervousness (male 0.2%, female 3.4%), and 1.4% because of depression (male 0.2%, female 1.2%).

We also conducted focus-group discussions and interviews with the involved staff. Overall, the staff appreciated the efforts toward more inclusive practices at the eye hospital and also had the impression that it improved the reputation of the hospital. Mainly due to the additional workload, the staff believed that it might be difficult to implement the WG questions on a daily basis, which would require more human and administrative resources. It was recommended to use the extended questionnaire as it seemed to yield a more “complete” picture of the situation of an individual patient. However, asking patients about mental health conditions was not always straightforward, such as one comment from a staff member who stated that “one person started crying when I asked the last four questions and I didn’t know how to comfort her.” In addition, the hospital administration plans to use the results to advocate for the needs of persons with disabilities and to mitigate disability-related barriers when communicating with health authorities in the region.

Overall, patients with single and multiple disabilities comprise a significant number of patients visiting this eye hospital in Paraguay. The high number of patients who have difficulty with communicating stresses the need and importance of patient-centered approaches in eye hospitals. More work needs to be done to evaluate the impact of collecting disaggregated data by disability on the outcome of medical management and rehabilitative or low-vision services.

*The Spanish version was adapted to Paraguayan Spanish as there are small language differences. For the Guarani translation, the Paraguayan Spanish version was used. First, a Guarani version was made and then translated back into Spanish for testing. The Guarani version was reviewed by several FV members who are fluent in Guarani, especially by the external staff at the Belén clinic.  

3. Blogs

Blog #1 - UN Statistical Commission - “Better Data Better Lives”

Blog written by Dr. Elizabeth Lockwood, CBM International
The UN Statistical Commission was held from 5-8 March 2019 at UN Headquarters in New York with the theme “Better Data Better Lives.” The event was particularly relevant as it marked the 50th session of the Statistical Commission.

On the first day of the meeting, the SDG indicators and their progress were discussed, which centered around the ongoing work on the implementation of the global SDG indicator framework. Many Member States expressed support for the work of the IAEG-SDGs, but showed concern about the lack of data in some situations and also that some indicators are not measurable. Important to note that in 2020, there will be a review of the global indicators. In terms of disability data, Ghana and Suriname expressed concern over indicator 16.7.1 and the challenge of disaggregation by disability of this particular indicator: “Proportions of positions (by sex, age, persons with disabilities and population groups) in public institutions (national and local legislatures, public service, and judiciary) compared to national distributions.”

As a fruitful outcome from long-term advocacy, with CBM as a key partner, an official background document was shared at the meeting over Data Disaggregation and SDG Indicators: Policy Priorities and Current and Future Disaggregation Plans.

Disability data are strongly included in the document, such as the availability of current and future indicators that disaggregate data by disability (15 additional indicators – refer below for details*). Current indicators collected are on social protection and unemployment rate (1.3.1 and 8.5.2). Read here for more details on the SDG indicators. Furthermore, as the Stakeholder Group of Persons with Disabilities (SGPwD) we directly inputted into the section on policy priority areas for different population groups (section g). The SGPwD identified five key policy areas to be disaggregated by disability to support policymakers to address gaps and amend existing policies and regulations. These include: poverty eradication, education, employment, health, and accessibility, which were identified in a consultative manner and from a larger priority list of indicators.

On 6 March, CBM International, along with the Stakeholder Group of Persons with Disabilities, International Disability Alliance, the Washington Group, and the Department of International Development (DFID) co-sponsored the side event “Making disability visible in statistics.” The side event focused on bridging the gap between policymakers, civil society, and statisticians to develop evidence-based policies and thus improve the lives of persons with disabilities. The event highlighted current activities by NSOs, UN agencies, development ministries, organizations of persons with disabilities, and NGOs to improve the collection and use of disability data to meet the requirements of the CRPD and the SDGs. The Washington Group highlighted its collaboration with CBM, and the presentation given by IDA centered on IDA and CBM joint work on disability data.

Click here for more information about the side event.

Current indicators that disaggregate data by disability: 1.3.1, 8.5.2

  • 1.3.1 Proportion of population covered by social protection floors/systems, by sex, distinguishing children, unemployed persons, older persons, persons with disabilities, pregnant women, newborns, work-injury victims and the poor and the vulnerable.
  • 8.5.2 Unemployment rate, by sex, age and persons with disabilities

Availability of future indicators that disaggregate data by disability:
1.5.1, 5.2.1, 5.2.2, 8.5.1, 10.2.1, 11.1.1, 11.2.1, 11.5.1, 11.7.1, 11.7.2, 13.1.1, 16.6.2, 16.7.1, 16.7.2, 17.19.2

  • 1.5.1 Number of deaths, missing persons and directly affected persons attributed to disasters per 100,000 population
  • 5.2.1 Proportion of ever-partnered women and girls aged 15 years and older subjected to physical, sexual or psychological violence by a current or former intimate partner in the previous 12 months, by the form of violence and by age
  • 5.2.2 Proportion of women and girls aged 15 years and older subjected to sexual violence by persons other than an intimate partner in the previous 12 months, by age and place of occurrence
  • 8.5.1 Average hourly earnings of female and male employees, by occupation, age and persons with disabilities
  • 10.2.1 Proportion of people living below 50 percent of median income, by sex, age and persons with disabilities
  • 11.1.1 Proportion of urban population living in slums, informal settlements or inadequate housing
  • 11.2.1 Proportion of population that has convenient access to public transport, by sex, age and persons with disabilities
  • 11.5.1 Number of deaths, missing persons and directly affected persons attributed to disasters per 100,000 population
  • 11.7.1 Average share of the built-up area of cities that is open space for public use for all, by sex, age and persons with disabilities
  • 11.7.2 Proportion of persons victim of physical or sexual harassment, by sex, age, disability status and place of occurrence, in the previous 12 months
  • 13.1.1 Number of deaths, missing persons and directly affected persons attributed to disasters per 100,000 population
  • 16.6.2 Proportion of population satisfied with their last experience of public services
  • 16.7.1 Proportions of positions (by sex, age, persons with disabilities and population groups) in public institutions (national and local legislatures, public service, and judiciary) compared to national distributions
  • 16.7.2 Proportion of population who believe decision-making is inclusive and responsive, by sex, age, disability and population group
  • 17.19.2 Proportion of countries that (a) have conducted at least one population and housing census in the last 10 years; and (b) have achieved 100 percent birth registration and 80 percent death registration

Blog #2 - The 9th IAEG-SDGs Meeting Update - Collecting Disability Data Globally
Blog written by Dr. Elizabeth Lockwood, CBM International

Jean helps with the chores by shelling beans.

Jean Marie Vianney Kambanda is blind. He receives microcredit from a local savings group, to which he was invited by a CBM-partner organisation. ©CBM

CBM, as part of the Stakeholder Group of Persons with Disabilities, was represented at the ninth Inter-agency and Expert Group on Sustainable Development Goal Indicators (IAEG-SDGs) meeting over the global Sustainable Development Goals (SDG) framework took place from 25 to 28 March in Beirut, Lebanon. Hosted by the United Nations Economic and Social Commission for Western Asia, these meetings review the indicator framework for the goals and targets of the 2030 Agenda for sustainable development at the global level.

Here is a summary and update of the ninth meeting:

  • A number of countries and UN Agencies included disaggregation by disability in their interventions (e.g., UN Women), agreed the importance of using the Washington Group short set of questions, but also indicated the challenges of collecting data; but, regardless, are starting with the collection of small samples of disability data.
  • The UN Statistics Division highlighted persons with disabilities as one of two good examples of policy priorities of disaggregated data included in an official background document from the 50th session of the Statistical Commission (which emerged from the disaggregation meeting at the 8th IAEG-SDGs meeting in Stockholm). The policy priorities are highlighted in that paper titled, “Data Disaggregation and SDG Indicators: Policy Priorities and Current and Future Disaggregation Plans.”
  • All additional relevant tiers for persons with disabilities (16.6.2, 16.7.1b, 16.7.1c, 16.7.2, 4.2.1*) were reclassified from tier III to II (details below).
  • The new Co-chairs are from Sweden and Tanzania.
  • CBM gave two official presentations in collaboration with the International Disability Alliance as part of the Stakeholder Group of Persons with Disabilities: the first on the disability data advocacy working group that we co-facilitate, and the second on the perspectives of a data user.

CBM presented at the ninth IAEG-SDGs meeting in March 2019

CBM presented with International Disability Alliance at the 9th IAEG-SDGs meeting in March 2019. ©CBM

Next Steps and Next IAEG-SDGs Meeting

The data disaggregation workstream will continue its work and revise and update the document on disaggregation tools and methodologies, keeping in mind that methodologies are defined by country needs.

The next IAEG-SDGs meeting is critical and expected to be held in Addis Ababa in November 2019.

At this 10th meeting, the IAEG-SDGs will discuss and request additional information on proposals containing possible indicator deletions, replacements, adjustments and additions with custodian agencies and other experts in preparation for the final proposal for the 2020 review.

This proposal will be finalized by the end of November in order to be submitted to the Statistical Commission for consideration at the 51st session of the UNSC in March 2020.

Tier Reclassifications

Indicators relevant for persons with disabilities include: 16.6.2, 16.7.1b, 16.7.1c, 16.7.2, and 4.2.1.

  1. Indicator 16.6.2 Proportion of the population satisfied with their last experience of public services — Reclassified from III to II
  2. Indicator 16.7.1 Proportions of positions in national and local public institutions, including (a) the legislatures; (b) the public service; and (c) the judiciary, compared to national distributions, by sex, age, persons with disabilities and population groups:
    • 16.7.1b — Reclassified from III to II
    • 16.7.1c — Reclassified from III to II
  3. Indicator 16.7.2 Proportion of population who believe decision-making is inclusive and responsive, by sex, age, disability and population group — Reclassified from III to II
  4. Indicator 4.2.1 Proportion of children under 5 years of age who are developmentally on track in health, learning and psychosocial wellbeing, by sex — *0-1 year of age not reclassified (remains at tier III, but is a work in progress); 2-4 years of age for reclassification to tier II

4. Updates and other news

Update #1: UN Statistical Commission - Side Event
On the second day of the UN Statistical Commission, the Stakeholder Group of Persons with Disabilities co-sponsored a side event on ‘Making disability visible in statistics.’ The side event focused on bridging the gap between policy makers, civil society, and statisticians, which constitutes a major obstacle and hindrance to making progress on the development of evidence-based policies and thus improving the lives of persons with disabilities. The event highlighted current activities undertaken by NSOs, UN agencies, development ministries, organizations of persons with disabilities and civil society to improve the collection and use of disability data to meet the requirements of the UN CRPD and the SDGs.

Click here to watch a recording of the side event.

Update #2 - Commission on the Status of Women (CSW) Presentation
The International Disability Alliance (IDA) was invited as a panelist at the sixty-third session of the Commission on the Status of Women during an expert session on Monday, 18 March 2019. The theme of the session was “Women’s empowerment and the link to sustainable development: the data challenge and opportunities.” This panel discussion provided an opportunity to share challenges regarding disability data, particularly with regard to data on the situation of women and girls with disabilities. IDA presented about ‘Making the SDGs count for women and girls with disabilities - the data challenge and opportunity’.

Click here to watch the panel presentation.

Update #3 - Ninth IAEG-SDGs meeting in Beirut, Lebanon from 25-28 March 2019
The ninth meeting of the Inter-agency and Expert Group on Sustainable Development Goal Indicators (IAEG-SDGs) was held in Beirut, Lebanon from 25-28 March 2019. The Stakeholder Group of Persons with Disabilities attended this meeting and presented its Disability Data Advocacy Working Group.

Update #4: Consolidating Logistics for Assistive Technology Supply and Provision – Phase II (CLASP II)
Update shared by: UCP Wheels for Humanity

Consolidating Logistics for Assistive Technology Supply and Provision – Phase II (CLASP II) is a USAID-funded project implemented by UCP Wheels for Humanity (UCP Wheels) that increases access to a variety of high-quality, affordable assistive products, and promotes appropriate provision globally. CLASP provides a solution to supply challenges faced by wheelchair service providers and governments in less-resourced settings including limited product variety, extensive lead time, and logistical burdens.
According to WHO, up to 70 million people worldwide need a wheelchair for basic mobility and as many as 95% of them do not have one, limiting their social inclusion and participation. CLASP’s mission is to increase access to quality assistive products for people with disabilities in low and middle-income countries. The goal of CLASP is for buyers, service providers, and other stakeholders to have access to different wheelchair models and non-wheelchair products from a number of suppliers and to consistently provide products of excellent value.

Through a consolidation warehouse, CLASP enables buyers to make large or small orders of mixed assistive products and sizes, delivering assistive products that best suit users’ individual needs faster and more efficiently. CLASP stocks adult and pediatric wheelchairs, walking aids, cushions, spare parts kits, and modification kits from suppliers including Motivation, Whirlwind, UCP Wheels, DDO, Jarik, and INTCO. All wheelchair products come with a standard set of promotion and support materials that provide details of a product’s performance specifications, plus instructions on the proper use and care of the product.

A Product Advisory Council, comprised of clinical and technical experts, selects which GATE products will be added to CLASP through an annual bidding process and on a rolling basis to ensure that CLASP is responsive to market needs. CLASP continuously works to diversify its product catalog in response to the needs expressed by the community. Please take a few moments to answer this brief survey on the current priority needs for assistive products in your context.


Update shared by: Ayeni B.Oluropo

The Nigeria Discrimination Against Persons with Disabilities (Prohibition) Act, 2018 was finally signed into law by Nigeria’s President Muhammed Buhari on January 23, 2019. Prior to the signing of the Act into law, the disability movement in Nigeria has for decades encountered a daunting task ensuring the passage of this key legislation, despite the teeming number of persons with disabilities in the country. According to the WHO 2011 report, at least 25 million of Nigerians have a disability. Efforts by International Development Partners and Donor Agencies have resulted in a multi-million grant-in-aid provided by International Development Partners and donor agencies such as the DFID, USAID and others to support advocacy and awareness raising for the passage of the bill.

The frustrations of Disabled Peoples Association/Organisations and civil society organisations working with persons with disabilities have been heightened due to the fact that Nigeria has signed and ratified both the Convention and its Optional Protocol since March 30, 2007 and September 24, 2010 respectively. The signing of the UNCRPD and its Optional Protocol have not translated into any significant improvement in the lives of persons with disabilities in Nigeria, as they continually battle exclusion and deprivation in every facet of public and private life. This has resulted in majority of persons with disabilities being among the groups living in extreme poverty because they lack access to socio-economic and political opportunity because they lack a voice.

Unlike the Gender Affirmative Action, the Affirmative Action for Persons with disabilities through the enactment of the legal framework for the promotion and protection of their rights have not gained traction with political office holders. Prior to signing the bill into law by the Buhari administration for instance, the bill had experience setbacks with the refusal to sign it into law under the administrations of President Olusegun Obasanjo and Goodluck Jonathan. This is in spite of the fact that the National Assembly passed the bill for presidential assent during the tenure of these two presidents.

After the euphoria that greeted the signing of the bill into law, the pertinent concern is the effectiveness of its implementation, most especially at the sub-national level. There are growing concerns that the signing of the bill into law might just be one of those numerous laws that do not get required attention in terms of implementation. The issue of implementation is of utmost concern considering the fact that the Joint National Association of Persons with Disabilities (JONAPWD) and other stakeholders within the disability community may not have the required skills, competence and resources with which to ensure effective implementation of the Act. This fear has further been exacerbated by the fact that despite being a signatory to the Convention and its Optional Protocol, Nigeria has not for once submitted any report to the secretariat of the convention while gross violations of the rights of persons with disabilities continue with vigor.

This is thus a clarion call to all International Development Partners and Donor Agencies to support the implementation of the Act, most especially at the sub-national level through capacity strengthening, awareness raising and funding to support innovative initiatives by Disabled Peoples Organisations and civil society groups working with persons with disabilities. Through this, the Disability Act in Nigeria will not just be one of those Acts but an effective one that will impact positively the lives of the generality of persons with disabilities who are amongst the downtrodden in Nigeria.  

Update #6 - Webinar: “Debrief from 9th IAEG-SDGs meeting and next steps”
The Stakeholder Group of Persons with Disabilities hosted a webinar on the 10th of April, which provided a debrief on the 9th IAEG-SDGs meeting and the next steps. The webinar covered information, updates and the way forward on the global SDG indicator framework.

Click here for a recording of the webinar.

Click here for documents and presentations from the 9th IAEG-SDGs meeting.

Please contact Marianne Haslegrave (mh [at] commat.org) and/ or Barrie Bain (barrie.bain [at] outlook.com) if you have any questions.

5. Resources

Collecting and using data on disability to inform inclusive development
Plan International and the CBM Australia - Nossal Institute Partnership for Disability Inclusive Development developed a practice note which outlines ways in which disability data can be collected in program settings to support both inclusive development practices and inclusive development outcomes. The practice note includes a brief overview of disability-inclusive development practices and the need for data to support this, key issues and principles to consider when collecting disability inclusive data, how information can be used to strengthen disability inclusion at all stages of the project and program cycle and methods and tools that can be used to gather data with both adults and children with disabilities. Click here to read the full practice note.

EUD’s Gender Equality Working Group - inputs to CSW presentation
Following a widely disseminated call for inputs to a presentation on “Making the SDGs count for women and girls with disabilities - the data challenge and opportunity” from the International Disability Alliance, EUD’s Gender Equality Working Group contacted all thirty-one National Associations of the Deaf asking to provide EUD with inputs from the national levels on progress, gaps and challenges in collection, reporting, research, analysis and dissemination of gender statistics, lessons learned and good practices in meeting the gender data requirements to monitor the SDGs for women and girls with a particular focus on women and girls with disabilities.

Click here to read about the five inputs that EUD received and shared with the International Disability Alliance.

Click here to read more about the inputs shared by Spain.

E-learning on Collecting Data for Inclusion of Persons with Disabilities
HI has launched e-learning on Collecting Data for the Inclusion of Persons with disabilities in Humanitarian Action – The Application of the Washington Group Questions (WGQs). This is included as part of a learning toolkit providing guidance on the application of the Washington Group Questions in humanitarian settings.

Country diagnostics from development finance institutions
The European Bank for Reconstruction and Development, European Investment Bank, the International Financial Corporation, the World Bank, DFID and Sida launched a new joint website on 10th of April 2019 that provides an in-depth economic analysis of the countries they support and helps them address key challenges.
The Country Diagnostic Platform will publish diagnostic papers that identify obstacles to progress as well as opportunities for development. Within the database, you can select specific countries and see reports from the aforementioned agencies on various aspects of development such as poverty reduction.

Click here for more information about the joint database.

IFES’ Election Access Observation Toolkit
IFES’ Election Access Observation Toolkit is a publication that highlights a methodology for collecting data on the participation of persons with disabilities before, during, and after elections. This data can be used by DPOs to create recommendations for policies and by election management bodies (EMBs) and other government stakeholders to determine interventions to increase accessibility and inclusion in electoral processes. Click here for more information.

UN ESCWA Data Portal
The United Nations Economic and Social Commission for Western Africa (ESCWA) launched an Arab region Data Portal that offers a variety of statistical services and products and facilitates open access to statistical data, analysis, and information on its member states. Click here to read more about the launch of the Data Portal.

6. Marketplace

  • SAVE THE DATE! On Friday, 14 June in New York, UNICEF and the Stakeholder Group of Persons with Disabilities, are organizing a one-day disability data event for those already attending the 12th session of the Conference of States Parties to the CRPD (11-13 June). The event will focus on disability data and include some training, thematic discussions, advocacy strategies, and informal exchanges. Details are forthcoming.
  • ENGAGE! To stay up to date and engage in the most recent dialogues surrounding disability data, please join our Disability Data Forum ListServ here.
  • INFORMATION! Find more information regarding the activities of the Disability Data Advocacy Working Group here.
  • ENGAGE! To input into future disability data newsletters, please email hlpf2019 [at] ida-secretariat.org with your submissions.